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Monday, November 28, 2011

Three

Hello, KC readers. It has been awhile and I thought it was finally time to come back and say, "Yes, I'm still alive."

I've been meaning to post for a long time but it gets hard sometimes. Every time I sit and try to write about the happenings lately - I tend to get emotional.

I has been eight months since I've learned of my bone mets. I suppose I'm doing better than I thought I would be doing at eight months, but in a lot of ways - I'm also shocked at how quickly my life has turned.

I went from running a business, being a semi-single parent (the MR was working in Korea for over four months), running around cooking, cleaning, and taking care of a Kindergartener with a million after-school activities - to being almost bedridden.

How life can change so quickly.

As I approach my 33rd birthday, I can assuredly say this is not the life I had envisioned for myself. It has now been three years since cancer touched my life. I'm thankful to still be alive but at the same time I would much rather not have had to deal with everything I've dealt with these past three years.

Three years ago I was confident. I had a kick-ass attitude and I was sure I was going to beat this stupid, little disease called cancer. I was afraid - sure - but I was also extremely optimistic and thought that if I could find the best surgeon and the best radiation oncologist then I wouldn't have to deal with this cancer again for a very, long time.

I had two and a half years of a semi-normal life before it was shattered early this year by news of my metastases.

I have to admit I knew something was up even before I had the scans that confirmed the cancer had returned. My BFF got married in March of this year - I was her matron of honor. We have been friends since we were 14 years old and I have dreamed of her getting married forever. Do you know how long I've been waiting for her to finally get married? Do you know what I did to get her married? LOL. Let's just say I put a word out to EVERYONE I knew that I had a single friend who needed a man...

NOTHING was going to stand in the way of her perfect wedding. I made sure to schedule my scans for the Thursday following her wedding because I didn't want anything to ruin her special day. I figured she would be away on her honeymoon by then and everything would be just peachy.

Two days before her wedding - I got sick.

Extremely sick.

I thought it was a cold and I had to skip the pre-wedding festivities (brunch and spa-day) because I wanted to make sure I was in top form for the actual wedding day. The night before the wedding my fever spiked up to 105 degrees and against better judgement I refused to go to the ER and instead stayed in bed taking Tylenol and throwing up. I literally threw up ON my bed because I didn't even have the strength to lift my head and aim into a trash can. All I can say is thank goodness for heavy duty mattress covers. =/

I was terrified to go to the ER because at the time my parents were still working full-time and the MR was in Korea and I was Munchkin's only care provider. I knew that if I went to the ER they would keep me there and that would mean not only would I miss the wedding but Munchkin would be without both parents.

Yes, I was thinking illogically and being totally irrational.

I know someone would have taken care of Munchkin and I know I could have missed the wedding - but my fever induced state wasn't processing things correctly. On the day of the wedding I couldn't get up to get make-up done. I told the wedding party that I would sleep all day and try make it to the ceremony. By noon, it was obvious that I wasn't going anywhere...

I missed my best friend's wedding.

Her cousin took my dress and my place in the line up. Munchkin was a ring bearer and even he was late and didn't have time to get his hair done. I wasn't there to see my BFF walk down the aisle, I wasn't there to see Munchkin walk down the aisle as a ring bearer for the first time, and I wasn't there to see my BFF kiss her husband and seal the deal.

I missed it. I missed the wedding. Everything was a nightmare.

While lying in bed - utterly sick - I had this nagging feeling that the fucking cancer was back.

Through the help of a friend (don't report us!) I got my hands on antibiotics the night before the wedding and was able to feel somewhat normal by the evening. Luckily, the wedding was very close to my house and one of my other friends was able to pick me up.

I made it to the reception JUST in time to recite my MOH speech. I was an utter mess and I doubt anyone understood a word of what I was saying. Immediately after my speech, I kissed the bride and headed home to rest. I passed out the second my head hit the pillow but I was content because I was able to get a few pictures with the bride. I still feel incredibly guilty about having caused such a ruckus on what was supposed to be a perfect day. Never in a million years did I think I would miss my best friend's wedding.

The following Thursday I had my CT's and they confirmed my suspicions. The cancer was back and I was also recovering...from PNEUMONIA.

Yes, I could have died. I now know that next time my fever spikes to 105 degrees, to just go to the damn emergency room.

This second battle with cancer is different. My confidence is no longer there and in many ways I've become complacent. I no longer believe that I will beat this. I'm more pragmatic and just hope I can treat the symptoms and extend my life for as long as possible.

I'm not ready to die.

I've been through four separate courses of radiation. First it was my T-spine in May, my right hip in July, my L-spine in August, and now I'm currently getting radiation to my left hip. As one of my DR's said to me recently, "radiation works beautifully" on me. The spots treated earlier in the year are all shrinking and healing and my right hip looks as if the bone is even reattaching itself.

I'm currently in a lot of pain because I had a compression fracture on my L-spine. The radiation helped TREMENDOUSLY and that tumor is no longer growing, but I'm told the pain I have now may be chronic. This means for the first time since my diagnosis I am actively taking pain killers around the clock. Sometimes the pain killers do not work. During those moments of agonizing pain I feel as if the world is closing in around me and I'm dying - right there, right NOW.

I have gone from walking, to being on crutches, to walking, to being in a wheel chair, and to walking again. It is amazing what the body is capable of doing. My body is destroying and repairing itself on a daily basis. I was having difficulty walking because of a tumor on my left hip bone but after a week of radiation (with two more weeks to go) the pain has already subsided substantially and I am again walking without a limp.

I was also lucky and my insurance company approved an experimental drug called Sutent off-label. I took it for five days at the full dose before I had to stop because of all the serious side effects. The drug made me WORSE than without. I'm now recovering from the drug and will take it again at half the dose. I've spoken to a few people who were able to stabilize the growth of their ACC while on this drug - so I have lots of hope.

I hate drugs. I always hated drugs so being dependent on them is humbling. I can't stand the side effects and I refuse to take more drugs to combat the side effects.

The pain from the bone mets is what drives me crazy. I wasn't able to exercise until recently so my lack of activity has caused my legs to deteriorate into skinny, bony, scary looking excuses for limbs. I weigh just 105 pounds - my weight in high school. My lack of appetite is scaring everyone around me but food is the last thing on my mind these days.

Three years ago, I had no worries and life was moving along blissfully. Business was good, the MR was set to start working under his father, Munchkin was growing up to be a smart little kid. My biggest worry at the time was whether to buy my first Chanel caviar jumbo with gold or silver hardware (I got silver).

It all came to a blow with just one CT scan that showed a mass in my sinus.

Life is unexpected.

You will never know what tomorrow holds for you so be sure to stop and reflect.

46 comments:

I just wanted to say that I've been silently following your blog for the past few years. I also have a MR and a Munchkin and each time I see an update from you, I get tears in my eyes. I wonder to myself if I would have your strength and sheer determination to live life to the fullest. You are such an inspiration and a reminder to never to take life for granted. Please know that complete strangers like me are thinking of you and praying for your recovery. Thank you so much for sharing your story and your recipes.

I happened to stumbled upon your blog recently, and I am so touched by your positive outlook on life despite your current circumstances. You are truly strong and courageous woman. I am praying for complete recovery for your health. May God bless you!

I've been also following your blog for a few years now. It breaks my heart to read your post at times and I get all teary-eyed and some moments...like this post, I just want to ball my eyes out. I'm 30 yrs old, married but no kids yet and sometimes to be truthful, I get caught up in the superficial, materialistic ways of life...but after I read your post, you make me realize what is TRULY important in my life. Your posts have made me think about things more deeply and you always remind me to reflect all the blessings in my life. You are utterly AMAZING and so BRAVE and please don't give up. Keep fighting. And thank you so much for being able to share such personal posts with the rest of us! You are in my prayers and thoughts!

You amaze me. You are so strong and inspiring. You and your family are in my prayers. Thank you for waking me up and making me see what is important in life. Oh and thank you for your yummy recipes. My little ones love the cucumber ban chans. :P

I have been following your blog and stories about your illness for many years. You have to be so proud of yourself for being strong for your child and family. I've seen a loved one go through cancer treatment and I know how hard it is. Keep fighting and use your humor to get you through the tough times. Thank you for sharing your ordeal. Please keep on posting!!

I check your blog often hoping for an update because I've been following your journey and am truly hoping for you to feel better. Fight with everything you've got. You are very brave and thank you for sharing your story with us. You are in my thoughts and prayers.

Thank you for posting and keeping us updated! I came to your blog because of the Korean food, but it has become much more than that... Your honesty, courage, and spirit are inspiring. As mom to some munchkins myself, I am pulling for you to get through the cancer this second time around- because I believe that although you are tired, you are also a fighter and will come out the other side victorious!!! Your son, husband and best friend are lucky to have you!

Your stories are so inspirational and you are such an amazing woman. Even having not met you, I sense what a strong person you are. Your family, friends, son...are all very lucky to have you in your life. I pray you well and I believe you will win this battle!

Thank you so much for this update. I feel so bad for all that you and your family must endure. My meager words seem inadequate. . . but please know that there are many of us who have come to love you and are so touched by your willingness to share your personal thoughts and feelings. I continue to think and pray for you daily.

I, too have been following your blog for sometime now. I love your attitude, wit, and perseverance. I also love your courage and willingness to share so deeply with your readers. I think of you often and will send healing prayers your way <3

I'm one of your blog followers too. You're such an amazing woman with such a great attitude. Sometimes life doesn't play fair with anyone but I'm sure you will get through this situation. I'm sure your sickness will be long gone soon. I pray for you! Thank you for such a great blog!

Your update made my day! I love reading your blog and learning that you still have a lot of fight left in you.

I'm sure that just being there and making your MOH speech meant the world to your BFF. She's lucky to have such a loyal friend. Thinking of others first in the most difficult times shows just how amazing you are as a human being.

this posting brought me to tears...life is so unpredictable.you and your best friend are so lucky to have a special relationship like that.i admire you for your attitude, honesty, and courage...keep on keeping on and we are all praying for you.

I, too, sit here with tears in my eyes. My words feel inadequate; I want to convey support, encouragement, hope. Thank you for allowing us to be a part of this journey; we are collectively praying for you and your entire family! andra

thank you for sharing your story. i've been following your blog for a while and i just had to comment today and say that i will be praying for your recovery. stay strong and have faith!!! this is something you can beat.. i've seen it with my own eyes. miracles happen. please don't get discouraged!!

Love and compassion. Sending love and compassion. May you know health, may heaven be merciful to you. I'm so sad reading your post. May God restore you to health in body, mind and spirit. Sincerely, a faithful reader.

Your recipes are fantastic! There are so many recipes out there that don't work but yours are delicious! I've tried your bae-chu gook, jaeng-ban gook soo, dwenjang jji-gae, mushroom bokeum and they're all good.

I check your blog almost daily for the latest posts (and recipes). My heart is breaking for you, munchkin, the MR and your entire family.... There is nothing I can say that will change anything, but please know you have touched my heart like no one else has. Please be well, be strong.

I have been checking your blog for the past year and you have really touched my life with your recipes and your ongoing fight with cancer. Please stay strong and know that your words are touching and prayers are sent your way. Please keep us posted.

thank you so much for sharing. I have been thinking of you and wondering how the journey was going. I'm also praying for you and your family. I too have a Mr and a Munchkin who is about to become a big brother and you're absolutly right, one never knows what kind of things need to be dealt with in one's life. I won't even pretend to know what it's like to be in such hardship but I have much confidence in you and your willingness to stay strong.

I just stumbled upon your blog today while searching for some Korean recipes. I am looking forward to trying them. Thanks for posting these and sharing your cuisine and your life. Stay strong and take care. Prayers for you and your family.

I've come to see you as a strong, resilient fighter, and I know that even the strongest of us have our low moments, and times when we want to give up. It's okay to have these moments of doubt, when you just want to give up, and vent, in fact, you need these!

There are thousands of people who have been touched by your remarkable attitude and AMAZING cooking, so please keep on fighting, keep on loving, and keep on LIVING. Let the strengths and hopes and prayers of thousands of strangers bring you back to the place where you were a few years ago when the ONLY attitude you could have was "FUCK CANCER", and help lift you out of this time of struggle and hardship. We're here with you.

Thank you for sharing so much. From your difficult and trying journey to your wonderful tips in the kitchen. You have reached and touched so many, more than you could ever imagine. I do believe in miracles and I believe in a higher power. We your audience, root for you. The sound of prayers in your behalf is loud. As you said, the body is amazing...and I say that will from the power of love is even more so. Hang in there. You have made it this far with incredible fight and strength. There is so much more from where that came from.

i just wanna give you a sweet and long kiss on ur forehead, and wish you the life that u always wanted. i hope that u will get well soon, and even if u missed ur friend's wedding i wish u to attend ur son's wedding ^^

I am still praying for you and healing. HUGZ Keep fighting, I know it is hard, and will be hard. Fight always. Thank you for everything your have shared on your blog. Thank you for being a kick ass person. :)

Hi, I've just (a few minutes ago) read this post in your blog. I don't know if my words will get to you but now I'll tell you a short version of my life and I hope you read this.Well, I'm 20 years old and My grandmother, my aunt and my mother have a incurable tipe of genetic cancer (my grandmother already died, a long time ago). My mother and my aunt had to live their lives struggling every day to beat this cancer. My aunt have two children and my mother have only me. The thing is, my mother besides cancer have breast cancer and neuropathic pain in her legs, so a few years ago when this neuropathic problem began, she couldn't walk because of the pain, and she went to hospital for a long time (she takes pain killers now and she's better, not perfec, but better).The "funny" thing in this story is that when I was 11 years old, making a genetic test, doctors found out that I had cancer too, and then I had to do a surgery.Well, when I was eigtheen I was making my Semestral Exams and they found out that I had to do other surgery.My mother between my two surgeries had several opperation because of this cancer and so she has several organs that was taken and this is not a very good thing because she needed this organs (I didn't wanted to enter in details but it's her's - ours - Endocrine glands).Well, my point is that I still live normally, I still have dreams, my mom and aunt too, we try to live like normal people. When I was Younger I thought that this was nothing, today I think that this everyday battle have a meaning, but I never feel afraid of anything.My mother alwais was afraid of leaving me so since I was Young she told me that maybe soon she wasn't going to be there with me so I had to be smarter and faster and more inteligent than the other kids. This was good for me, now I take care of myself and I help my mom a lot.I guess the greatest fear that you have It's to lieve your child...All I can say to you it's to tell him to not miss you, tell him to be a strong person and a happy person, so that you will be happy too.My mom always said to me that if she died I would have only two days for cry, and then I would have to move on, because the world wouldn't wait for me. (This is important)The other thing that I want to tell you is that don't be afraid to die, Think about the things that you accomplished in your life and be happy, don't feel afraid of something that maybe not now or even tomorrow, but is certain to happen someday. But, and that is something that I have in my life (it's crazy, but for me works - use your own metaphor), If the world, one day, it's taken by death alives I would fight till the end, I don't care if I had to kill or cheat, I would fight with all my strength, so I tell you: don't give up, don't think that maybe this time you will not make it, just live your life. Tell the people next to you that you don't want them to suffer, take care of the legal stuff (it's very important for your family), don't be selfish and tell them to not suffer too much, and be careful about you kid and the person that has the legal guardianship (I know some bad storyes about evil stepmothers).Take care of everything;Don't be afraid;Fight till the end;Don't give up;Have always good thoughts, it's important;Make the people around you have good thoughts, good energies are always good;If you have a religion ask for them to have good thoughts for you (catolic church can make a group of prays or something) helps a lot, I heard about that;And, finally, keep going, keep living, good luck!

i too just stumbled on your blog by searching for a recipe for chicken jook for my twin munchkins and am at a loss. although we're strangers, my heart is breaking for you. regardless of the outcome, what you're going through right now at such a young age (i'm 35) with such a young child is truly unimaginable, but from reading just a few of your posts, you have the fighting spirit so seriously... fight on girl. sending prayers your way.

...ummm i don't really know how to start my comment...i just want you to know how amazing you are, and somehow you're my new inspiration in life <3 ...i wish and will include you in my prayers for more strength and be able to see the beauty of the world longer, longer and longer!...thank you for sharing your recipes and I LEARNED A LOT from you...keep fighting! AJA!!

I have been reading your blog since before your first diagnosis. I love your recipes and your spirit. (fyi, I am Taiwanese-American, and through good fortune, my best friends have been Korean, and they introduced me to this beautiful cuisine.)

Peace be with you, lovely girl. You have touched more people than most on this earth, certainly more than I ever will, likely. L'il Munchkin is blessed that you are his mom. He will hold your love -- and your yummy nurture -- in his heart Forever.

F..CK CANCER...that's the first word for me to you..i am 29 yrs old, my mom passed away 3 yrs ago and my grandma passed away when i'm still in middle school. i hav aunt that still fight against breast cancer and i know what the doctor told me that once you have that genetic in your family means you have to lived with that forever. But hey, you know what i learn something from this diseases..i learn to live happily, i learn to live healthier (because my doctor told me that oily food and some type of food can makes it grows) i learn to grow my own garden for i am really scared of chemical product, i learn to cook food and ended up enjoying it ( because you know how restaurant makes all the food more yummier..)so in the end, yes its sucks to hav cancer, yes its scared that we're gonna suffering but because of it also we learn so many things about life that we may not get it if we dont get cancer..i pray for u and your family..fight on it, never give up and try to always think about how this gonna change your life in different good ways

I used to read your blog years ago and I haven't read your blog in a long time but for some inexplicable reason, I felt to compelled to look you up again tonight to see how you are doing. I'm really sorry and saddened to hear what you're going through but I hope you know that you're an inspiration to me. Please keep fighting! You will beat this! Good luck!

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